The Ehlers-Danlos Society has helped to launch a center at Indiana University Health (IU Health) to advance research, education, and patient care in some of the least understood genetic diseases. Called The Ehlers-Danlos Society Center, it will provide comprehensive and multidisciplinary care for patients with Ehlers-Danlos syndrome…
A panel of physicians has voted in favor of adding Ehlers-Danlos syndrome (EDS) to the list of conditions that are eligible for treatment with medical marijuana in Connecticut. According to an Associated Press story, the vote took place Sept. 27 and the recommendation was officially accepted by Michelle Seagull, commissioner…
Genetic testing is critical to get an accurate diagnosis of vascular Ehlers-Danlos syndrome (vEDS) as clinical criteria alone is insufficient, and given its overlap with other disorders, suggests a real-world study carried out at American and European institutions. The research also highlights the importance of getting a trained geneticist…
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…
Young people with hypermobile Ehlers-Danlos syndrome have a considerable number of physical symptoms that have a significant affect on their ability to participate in everyday activities and on their mental health, a study confirms. The findings of the study, “Symptom complaints and impact on functioning in youth with hypermobile…
Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: The Rare Disease Film Festival” will focus on what siblings go through, according to the San Francisco festival’s co-founder,…
Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such issues during a recent talk at the New York Genome Center. Minssen directs the Center for Advanced Studies in…
A diagnosis of spontaneous renal artery dissection (SRAD) should be considered in Ehlers-Danlos syndrome (EDS) patients who experience sudden abdominal pain, a case report highlights. The report, “Spontaneous Renal Artery dissection in Ehler-Danlos Syndrome,” was published in the journal Kidney International Reports. Renal infarction is the…
Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people who’ve made it to adulthood. Neena Nizar doesn’t have to imagine. The 41-year-old English professor at Metro Community College in Elkhorn,…
The Ehlers-Danlos Society presented Jameela Jamil, a British actor and activist, with the Patient Advocate of the Year award at its 2019 Global Learning Conference, held recently in Nashville, Tenn. After accepting the honor through a video link, “The Good Place” television series star thanked the society for…
Get regular updates to your inbox.